HIV in Japan: Epidemiologic puzzles and ethnographic explanations

Abstract

Japan is widely perceived to have a low level of HIV occurrence; however, its HIV epidemics also have been the subject of considerable misunderstanding globally. I used a ground truthing conceptual framework to meet two aims: first, to determine how accurately official surveillance data represented Japan's two largest epidemics (urban Kansai and Tokyo) as understood and experienced on the ground; and second, to identify explanations for why the HIV epidemics were unfolding as officially reported. I used primarily ethnographic methods while drawing upon epidemiology, and compared government surveillance data to observations at community and institutional sites (459 pages of field notes; 175 persons observed), qualitative interviews with stakeholders in local HIV epidemics (n = 32), and document research (n = 116). This revealed seven epidemiologic puzzles involving officially reported trends and conspicuously missing information. Ethnographically grounded explanations are presented for each. These included factors driving the epidemics, which ranged from waning government and public attention to HIV, to gaps in sex education and disruptive leadership changes in public institutions approximately every two years. Factors constraining the epidemics also contributed to explanations. These ranged from subsidized medical treatment for most people living with HIV, to strong partnerships between government and a well-developed, non-governmental sector of HIV interventionists, and protective norms and built environments in the sex industry. Local and regional HIV epidemics were experienced and understood as worse than government reports indicated, and ground-level data often contradicted official knowledge. Results thus call into question epidemiologic trends, including recent stabilization of the national epidemic, and suggest the need for revisions to the surveillance system and strategies that address factors driving and constraining the epidemics. Based upon its utility in the current study, ground truthing has value as a conceptual framework for research and shows promise for future theoretical development.